Lived Experience–Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness
Authors: Karen L. Fortuna, Stephanie Lebby, Pamela Geiger, Diane Johnson, Sandi MacDonald, Ilana Chefetz, Joelle C. Ferron, Lisa St George, Rebecca Rossom, Joseph Kalisa, Tomislav Mestrovic, Joanne Nicholson, Willie Pringle, Armando J. Rotondi, Lauren M. Sippel, Amie Sica, Maria E. Solesio, Maggie Wright, Yaara Zisman-Ilani, David Gambee, Julia Hill, Alison Brundrett, Corinne Cather, Taeho Greg Rhee, Gail L. Daumit, Jessica Angel, Ian Manion, Patricia E. Deegan, Jason A. Butler, Nakristia Pitts, Denise E. Brodey, Aaron M. Williams, Joseph Parks, Brie Reimann, J. Todd Wahrenberger, Oscar Morgan, Daniel W. Bradford, Nicole Bright, Elizabeth Stafford, Andrew R. Bohm, Tracy Carney, Claver Haragirimana, Alisa Gold, Marianne Storm, Robert Walker
Journal: JAMA Network Open (2023)

Importance People with serious mental illness (SMI), defined as a diagnosis of schizophrenia spectrum disorder, bipolar disorder, or disabling major depressive disorder) die approximately 10 to 25 years earlier than the general population. Objective To develop the first-ever lived experience–led research agenda to address early mortality in people with SMI. Evidence Review A virtual 2-day roundtable comprising 40 individuals convened on May 24 and May 26, 2022, and used a virtual Delphi method to arrive at expert group consensus. Participants responded to 6 rounds of virtual Delphi discussion via email that prioritized research topics and agreement on recommendations. The roundtable was composed of individuals with lived experience of mental health and/or substance misuse, peer support specialists, recovery coaches, parents and caregivers of people with SMI, researchers and clinician-scientists with and without lived experience, policy makers, and patient-led organizations. Twenty-two of 28 (78.6%) of the authors who provided data represented people with lived experiences. Roundtable members were selected by reviewing the peer-reviewed and gray literature on early mortality and SMI, direct email, and snowball sampling. Findings The following recommendations are presented in order of priority as identified by the roundtable participants: (1) improve the empirical understanding of the direct and indirect social and biological contributions of trauma on morbidity and early mortality; (2) advance the role of family, extended families, and informal supporters; (3) recognize the importance of co-occurring disorders and early mortality; (4) redefine clinical education to reduce stigma and support clinicians through technological advancements to improve diagnostic accuracy; (5) examine outcomes meaningful to people with an SMI diagnosis, such as loneliness and sense of belonging, and stigma and their complex relationship with early mortality; (6) advance the science of pharmaceuticals, drug discovery, and choice in medication use; (7) use precision medicine to inform treatment; and (8) redefine the terms system literacy and health literacy. Conclusions and Relevance The recommendations of this roundtable are a starting point for changing practice and highlighting lived experience–led research priorities as an option to move the field forward.